RARE Champion of Hope Celebration
20 October 2020
Groundbreakers. Leaders. Advocates.
The rare disease community is full of people who inspire us all through innovation, research, compassion and a relentless spirit to affect positive change. Through the RARE Champion of Hope Awards, we honor and recognize true champions for rare disease. This year we will be recognizing leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders. Awardees will be announced at this year’s RARE Champion of Hope Celebration.
Register for your place at the RARE Champion of Hope Celebration, taking place 12th November 2020, 7pm-8pm. RSVP today for a virtual gala; experience exciting food and drink demos, entertaining performances, and inspiring stories of hope from the rare disease community.
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Christmas Card Competition 2019
Check out this year's Christmas Card Competition and how to enter
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Sunflower lanyards to support patients and visitors with hidden disabilities
Read about the new lanyards being given out at Heathrow, Sainsbury's and Gatwick to help support those with disabilities
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NTUK attends Small Charity Week
Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:
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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.
Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester
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Nerve Tumours UK adds BrowseAloud to their website
Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.
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11 year old inspired to run 31 miles within 8 hours for his brother who has NF
Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website
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Simon’s Story
Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:
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Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
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Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
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